Below is a summary of the findings from the study you helped me complete. If you have any questions or comments about the study, please feel free to contact me. There are phone and e-mail contacts at the end of the summary. This sample wasn’t large enough to determine if there were differences in certain kinds of health conditions but that is one of the things I want to look at in future studies.
Summary of Findings from the Family Caregiver Internet Experiences Study
Goals of the study were to:
- describe characteristics of family caregivers who use family caregiving Internet sites,
- identify purposes for which family caregivers use the Internet,
- identify perceived benefits and limitations of Internet use by family caregivers, and
- describe family caregivers’ perceptions of the effects of Internet use on their caregiving.
A brief message about the study was posted on sites that had material or services for family caregivers. The posting included a link to the study web site. The study involved collecting data in two phases. The first phase used an online survey to collect information about the caregivers.
Seventy two caregivers completed the survey. Most of them were women (91%) and white (89%). Caregivers who filled out the survey ranged in age from 24 to 79. The average age was 50. They were caring for at least one family member. Some caregivers were caring for multiple family members. Caring for a parent/stepparent (54.2%) or spouse/partner (30.6%) were the most common relationships. Other kinds of relationships included children, grandchildren, grandparents, aunts/uncles, and so on.
The caregivers had a variety of education levels although most had at least some college. Caregivers had a range of experience using the Internet. Most were confident of their ability to find information and support online but less confident of handling technical problems such as troubleshooting Internet hardware problems. Caregivers accessed the Internet from an average of two places, usually work or home, for their caregiving needs.
There were 9 categories of tasks listed on the survey. On average, the caregivers were doing almost 6 of the 9 task categories. Managing and Monitoring their ill family member’s health was the most common task (90.3%) while Managing Equipment was the least common (20.8%) task.
The second phase of the study involved telephone interviews with a smaller group of caregivers. This group was similar in terms of age, gender and education to the larger group. Fifteen caregivers were interviewed. From those interviews, several themes emerged. Caregivers usually started going online looking for information. Information about the disease, it’s treatment and most often, practical information was useful to the caregivers. Practical information included information that helped them solve problems, caregiving tips, specific skills they needed, information about signs and symptoms, what to expect, and information about services (e.g. legal, insurance, placement or financial advice).
Caregivers could all describe ways they decided whether the information online was credible or not. Attribution of information, an authoritative source for the information, sites with consistently reliable content and findings they could doublecheck elsewhere were all seen as more credible. Less credible were commercial sites, or unfamiliar sites, unattributed information.
To varying degrees for the caregivers interviewed, the Internet was a place where they could find emotional and social support for them as caregivers. They could compare their own situation to others, feel it was possible to get through whatever was happening and talk with others who really understood what they were going through. Caregivers were able to connect with others all around the world who were in similar situations. Caregivers became more knowledgeable consumers and used what they found online to advocate for their ill family member (e.g. with the doctors or insurance companies).
The round the clock availability of the Internet was helpful to them. It did take time to learn to use the Internet or to find specific information they needed but the Internet could also save them time. They were able to contact people or locate information more quickly and with less effort. The amount of information could get overwhelming at times as could the emotional cost of feeling so connected with others online. Caregivers would take breaks sometimes.
In terms of web site design, caregivers wanted sites with easy navigation and clear labeling of content. Information that was categorized (e.g. by disease stage, treatment, caregiving tips, message board) was helpful. It saved time and caregivers didn’t have to hunt so much for what they were looking for. Information summaries with links to the full text were valued. Links were valuable as the caregiver could chose to go deeper into a topic area but caregivers wanted links that were current and functional. Caregivers weren’t interested in a lot of special effects online. That was distracting and took too much time.
Definitions of medical terms and guides to how to pronounce them helped the caregivers feel more confident when talking with medical professionals and helped them understand what they were reading.
My thanks to the sponsors of the study,
*National Research Service Award T32
*Sigma Theta Tau, Beta Psi Chapter
*Frances DeZeeuw Memorial Scholarship Award
for their support. I’d also like to thank those who agreed to post the information about my study and the caregivers who participated. I hope this information proves beneficial. I will be presenting the information at a regional conference in April and have several articles planned so the information will get out to the professional community as well.
Danita Lee Ewing